Wednesday, September 30, 2009

Day +6

Today's post has been preempted by Hunter's evening nose bleed. We are waiting for platelets to arrive for an infusion. We will update you again tomorrow. Overall, prior to this evening, it was a good day.

Tuesday, September 29, 2009

Day +5 (Graphic/Everything worked out ...)

The nurse found Hunter having a significant nose bleed at 2:00 this morning. We aren't sure how long he was bleeding before she found him, but it must have been a while from the looks of him and his bedding. Luckily, three other nurses immediately joined in helping our nurse and me. One applied pressure to Hunter's nose, which he didn't exactly appreciate. A second supplied us with wet rags while making sure the used ones were put into the soiled linen hamper. A third manned Hunter's Line and IV pole. The fourth took Hunter's vital statistics, including blood pressure and temperature, during the commotion. Their assistance allowed me to calm him, not an easy task. The Physician's Assistant ordered an immediate platelet infusion. Honestly, the most difficult part was Hunter throwing up all of the blood he swallowed before we found him. He actually went back to sleep about 3:30, after the platelets arrived and we had cleaned him up. They also squirted Afrin up his nose to help with the clotting. Who knew? Unfortunately, his nose started bleeding again around 4:15. It took another team effort and some additional throwing up, but Hunter was back in bed asleep by 5:00. Hunter wanted no part of the second nose bleed, as he was so tired from the Benadryl and Atavant. He told the nurses to "move out of the way" so he could lie down with his pacifier and lamb. He wasn't concerned in the slightest about the additional bleeding. He slept soundly until 11:30, perfect timing since his Physical Therapist arrived at 11:31. He went from snoring to a "fishing expedition" in his room in less than two minutes. He did so well with his therapy that after it was finished he decided to take his Therapist for a walk down the hallway. He did very well all things considered, but he definitely looked like a drunken frat boy trying to make it home from the bar after last call. The doctors are still impressed with how well Hunter is doing. They will continue to monitor his platelet and hemoglobin/hematocrit levels. He will likely have a blood transfusion late tonight or early tomorrow.

P.S. for Day +3 ... I can't believe I failed to mention that Hunter had a dance party in his room with four of the nurses. He's received several musical greeting cards, which he loves to show off. On Sunday he was showing every nurse who came to see him the cards. When the music started to play Hunter would dance. When the music stopped he would "freeze" with his hands on his ears. Well, one thing led to another and he had the nurses dancing and freezing with him. I have to say it was pretty cute because each of the nurses came in when they had a chance and danced with Hunter for a few minutes. And each nurse came back in for one last dance before leaving for the day. Hilarious.

Monday, September 28, 2009

Sunday, September 27, 2009

Day +3 (Sleeping Beauty)

I may have spoken too soon regarding Hunter's sleep habits. He slept soundly from 10:00 last night until 10:30 this morning. It was blissful for me since I was on night patrol. I think a big reason he was able to finally sleep so well is his itching has almost completely subsided. The doctors decreased his new IV pain medication, for now, and increased his Benadryl. He had another great bath after riding around the unit in one of the toddler cars, which ended up parked in the tub room. He also spent some time on one of the family room video game consoles playing a Lightning McQueen game. Hunter was so invested in the video game the nurse had to bring his IV pole to reconnect him to his medications. Thankfully, he took another long nap today from 3:15 to 6:00. Currently, he's watching Elmo in Grouchland on repeat mode. He discovered Finding Nemo yesterday so that could potentially make it into his rotation along with Cars and Thomas.
Hunter seems pain and itch free so we are very pleased. However, we noticed his hair is beginning to fall out. We may break out the clippers soon!

Saturday, September 26, 2009

Day +2

Hunter definitely has his days and nights confused. He woke up in the middle of the night and did not go back to sleep until 5:00 am. He then slept in until 12:30 and was asleep again by 3:30 for a three and a half hour nap. Hunter threw up once when he woke up this afternoon, but quickly bounced back. Unfortunately, it looks like he is developing mucositis. He was very excited to take a bath today. He had great fun sliding back and forth along the tub while kicking and splashing water everywhere. He made us laugh out loud when he told us he wanted to lie down in the water and take a nap. The doctors are still adjusting his medicines in their attempt to determine the source of his itchiness. He seems a lot better today, but at times still can't keep from scratching. Honestly, other than a couple of disastrous diapers, it's been another good day.

Friday, September 25, 2009

Day +1 (Can you say rough night?)

Hunter is finally getting some well deserved rest, snoring in his crib. Overnight, in addition to being extremely itchy, he threw up twice and had two diaper explosions. Today his hives have subsided. He even asked for a popsicle and finished almost two. It's been a quiet day.

Thursday, September 24, 2009

Another Day 0

Hunter's transplant began at 12:50 this morning. The experience was extremely surreal. The infusion itself was similar to a blood or platelet infusion. The nurse hung the bag of marrow and ran it through Hunter's Line. The entire process lasted between four and five hours. Initially, Hunter was asleep but awoke during the course of the transplant. He was reluctant to go back to sleep until about 4:30. He woke up this morning about 9:45 in a good mood. Eventually he became distressed due to skin irritation. Hunter scratches his thighs, chest, neck and face the majority of his time awake and a portion of his time asleep. Unfortunately, his skin irritation has been difficult to get a handle on these past few days. We hope that once the trace amounts of morphine clear his system he will be more comfortable. Hunter took an abbreviated nap late this afternoon and again woke up in a good mood. He definitely seems intoxicated from the plethora of medications. Now we wait to see how his body handles the transplant and prepare ourselves for the variety of its potential side effects.

Wednesday, September 23, 2009

Day 0 (The moment ...)

The moment we've been waiting for has finally arrived. Hunter's transplant is scheduled to take place in the middle of the night. He's been doing as well as can be expected. The hives, a side effect from the ATG, continue to be his primary complaint. The Benadryl and Atarax don't seem to be providing much relief. The pain team thinks his itching may also be a reaction to the morphine and changed his narcotic earlier this evening. They will continue to monitor Hunter closely.

Thank you again for your continued support, prayers and well wishes. They are greatly appreciated.

Monday, September 21, 2009

Day -2

Hunter received his final dose of ATG this morning. Afterwards, he received a blood transfusion. He will receive his final dose of Cytoxan, which is also his final dose of chemotherapy, thankfully, tonight at 10:00.

Hunter spent most of the day sleeping after a surprisingly playful morning. His temperature continually fluctuates and he is, more or less, covered in hives. He watches either Cars or Elmo in Grouchland while he is awake. He still takes a few medications orally in the morning and evening. Although the doctors switched most of them to IV because it will become increasingly difficult for him to swallow. Unfortunately, he threw up his medications this evening. We gave him a bath, as they are required daily, and he actually seemed to enjoy himself. However, we experienced a moment of panic. His nose began to bleed when we were drying him off. Luckily, it stopped pretty quickly. The nurse said they will most likely draw his labs earlier than usual to check his platelet count. We expect he will need a platelet infusion soon. Tomorrow serves as a day of rest prior to his transplant. Hunter does not have an appetite anymore and refuses anything he is offered, food or drink. He will be placed on IV nutrition within the next twenty-four hours.

Sunday, September 20, 2009

Hunter's current medication list ...

Acetaminophen (Tylenol) - pain reliever/fever reducer

Acyclovir - antiviral

Busulfan (Busulfex)* - conditioning (chemotherapy)

Ceftazidime - antibiotic

Cetirizine (Zyrtec) - antihistamine

Cyclophosphamide (Cytoxan) - conditioning (chemotherapy)

Diphenhydramine (Benadryl) - antihistamine/antinausea

Fluconazole - antifungal

Gentamicin - antibiotic

IVIG (Gammagard Liquid) - boost immune system

Lansoprazole (Prevacid) - antacid

Lorazepam (Ativan) - antinausea

Lymphocyte Immune Globulin (Atgam) - conditioning (chemotherapy)

Mesna - bladder protectant

Methylprednisolone - anti-inflammatory (steroid)

Methotrexate (Amethopterin)** - graft versus host disease prevention

Metoclopramide (Reglan) - antinausea

Montelukast (Singulair) - antihistamine

Morphine - pain reliever

Ondansetron (Zofran) - antinausea

Pantoprazole - antacid

Poly-Vi-Sol - multivitamin

Sulfamethoxazole and Trimethoprim (Bactrim) - antibiotic

Tacrolimus*** - graft versus host disease prevention

Ursodiol - prevention of hepatic sludge/Veno-Occlusive Disease

Vancomycin - antibiotic

* completed
** starts one day after transplant
*** starts one day before transplant

Day -3 (Part 2)

Hunter hit a wall this morning with his chemotherapy. He got very upset, basically inconsolable, minutes before the nurse hooked him up to today's ATG dose. He complained of mouth pain, which is not unusual, as he will develop mucositis. His blood pressure dipped several times, he continues to have hives over his face, neck, groin and thighs, and his temperature reached a high of 104.8. The nurse immediately gave him Benadryl, Reglan (anti-nausea), Tylenol and morphine to calm him. He fell back asleep quickly and he's napped most of the day. A doctor from the pain team came in to evaluate Hunter afterwards. She hooked him up to a morphine drip and the team will monitor him closely for the duration. We took him to his weekly chest x-ray and to have a bath while he was awake briefly this evening. He receives his third dose of Cytoxan tonight at 10:00.

Day -3

Hunter decided to stay awake until 11:30 last night. He was somewhat delirious. He kept demanding, "Coffee, daddy! I want my coffee! Give me my coffee! Daddy?!" Then at 11:30 it was like someone hit a switch, he was out like a light.

He's been asleep ever since. His blood transfusion after his dose of Cytoxan went well. We will find out what his blood counts are during morning rounds. Hopefully, everything will be ok with his platelet transfusion yesterday and blood transfusion last night.

He is a little fussy when having his labs drawn from his Line or when having his diaper changed but he doesn't actually wake up. He's been talking in his sleep some, reciting his ABCs or counting to ten. Our night nurse was kind enough to change most of his diapers so that I could sleep, or should I say attempt to sleep?

He has a bit of a fever again this early morning so the nurse gave him some Tylenol. They would like to get his fever down some before chemo begins. Hunter's next dose of ATG is scheduled for 8:00 this morning. They will infuse it at a faster rate since he "tolerated" it well yesterday. Today it will last four to five hours.

Saturday, September 19, 2009

Day -4

Hunter rocked like a star for most of his ATG* infusion today. It wasn't until the seventh hour that he hit a wall, spiked a fever and needed an additional nap. Unfortunately, as he was finishing the dose of ATG, he got on all fours and threw up several times. The nurse gave him some Benadryl, Tylenol and an anti-nausea medication after we cleaned him and his crib. Hunter's fever hasn't completely subsided, but he seems more comfortable. Round two of Cytoxan begins at 10:00 pm. He will receive a blood transfusion afterwards because some of his blood counts are low due to the chemotherapy.

* ATG is a medicine made from horse serum that contains antibodies that help suppress the immune system. It helps to prevent the body from rejecting the new bone marrow cells from the donor. Also, ATG is used to treat graft-versus-host-disease. Some of the common side effects are fever, chills, rash or hives, decrease in white blood cells and platelet counts, and increased risk of infection.

Day -5/Day -4 ("Welcome to chemo!")

DAY -5

4:00 pm IVIG infusion (2 hours)

6:00 pm Pre-Cytoxan hydration (4 hours)

10:00 pm Cytoxan (1 hour)

10:30 pm Hunter threw up twice ... Our nurse walked in and said, "Welcome to chemo!"

DAY -4

2:30 am Hunter (finally) fell asleep

7:00 am ATG skin test

8:20 am Platelet infusion (1/2 hour)

9:00 am Hunter woke up ... in a good mood!

9:35 am ATG (8 hours)

Friday, September 18, 2009

Day -5 (Diaper Rash)

Hunter woke up out of his Benadryl haze at 1:00 am. He stood up in the middle of his crib and said, "I itching." I guess I didn't respond fast enough since I was out cold. He started yelling, "I itching! Itching! ITCHING!" I opened the door to our room, took one look at our nurse, pointed back at Hunter and said, "He's itching." She must not have responded fast enough because in my own personal haze I started saying, "He's itching! Itching! ITCHING!"

We changed his diaper and checked out his rear end. It's a little pink but doesn't look too bad yet. The nurse brought us some softer wipes, a cleaning spray and a diaper cream. He suffered only one other itching episode at 2:30, where he demanded I take his diaper off. He settled down for the rest of the night with a diaper change and some fresh cream. However, his itching must be serious because he is on Benadryl and Atarax.

He woke up this morning in a good mood. He gave his night nurse several hugs goodbye and told her, "Go. Go now." Also, upon meeting his day nurse, he began tickling her in inappropriate places. Luckily, he's only two.

He begins Cytoxan tonight at 10:00. We are bracing ourselves for any potential side effects.

Thursday, September 17, 2009

Day -6 (Part 2)

Hunter's night nurse just informed me that he will actually have another dose of Busulfan at 2:00 am. Luckily, he is fast asleep.

Day -6

Hunter was moved to a larger suite early this morning. We have no complaints about that.

He has one more dose of Busulfan scheduled for 8:00 this evening. Tomorrow night he begins his second chemotherapy drug, Cytoxan.

He continues to do well overall, but his appetite is slowly dissipating.

Wednesday, September 16, 2009

Day -7

Hunter's third day of chemo (Busulfan) has been uneventful so far. However, yesterday he showed signs of infection around his Central Line, general redness and irritation. The doctors now run antibiotics (an hour in length) after every dose of chemo. Today the area around his Line seems much improved. The dressing must bother him because whenever you look away from him he starts scratching it.

He eats well, perhaps a bit more particular about his food choices, but he's stopped drinking almost completely. He remains uninterested in milk and juice of any sort, which used to be a special treat. Subsequently, he receives IV fluids for much of the day and night. The chemotherapy drugs are hard on his kidneys so the doctors want to make sure they are constantly flushed out. We change diapers regularly and, at times, still can't keep up with his output. Hunter actually leaked through two diapers/sets of pajamas last night.

He remains a trooper and as charming as ever. We have two volunteers who will begin working with our family regularly next week. Hunter met them on Monday. One of the women is Allison. Hunter decided that she must be Alice in Wonderland. Also, we have had the same nurse, Amber, the past two days. Hunter decided that her new name is Hamburger. What can we do but laugh?

Tuesday, September 15, 2009

Day -8

Hunter was awake from 4:00 until well after 6:00 this morning. I mean really awake. I had to tap into my Supernanny teachings since he was doing anything he could to get my attention as I tried to sleep on the futon (if you can call it that) next to his jail cell (crib). Every time I even breathed he whispered, "Hi. Hi Daddy." I would have laughed if it wasn't so painfully early in the morning. He must have bounced off every bar of his crib in his excitement. I had to get up several times to unwrap him from his IV lines. Supernanny would have been proud that I refused to make eye contact with him!

Currently, he is out cold. A semi could drive through his room and he wouldn't move. Today's chemo starts now ...

Monday, September 14, 2009

Day -9 (Countdown to Day Zero/Transplant)

Hunter is currently on the third dose of his first chemotherapy drug, Busulfan. He is scheduled to receive a dose (which lasts two hours) every six hours for the next three days, four days total. He seems no worse for wear so far. The main side effect that accompanies Busulfan is nausea, however they give him anti-nausea medication before each dose.

He remains as outgoing as ever and has already won over several nurses. His speech and vocabulary are expanding daily and he honestly thinks he's a comedian. He's definitely keeping us on our toes with his constant energy and exuberance.

Sunday, September 13, 2009

Admitted ...

Hunter was admitted to Children's Hospital this afternoon at 4:00. The staff is running a variety of final tests prior to the start of chemotherapy tomorrow (Monday). His hospital room is a fairly large one person suite and the unit has several areas for him to play. He even has the opportunity to ride age appropriate bikes whenever he likes. Although we're not quite sure how that is going to work since he will be hooked up to an IV most of the time.

Currently, Hunter is in his crib, which looks like a toddler jail cell, reading a book to himself while receiving an IVIG treatment. Unfortunately, it doesn't look like he will be able to fall asleep anytime soon since the nurse must take his vitals every fifteen minutes for the next hour.

Saturday, September 12, 2009

All is well after a very long Friday ...

7:45 am Hunter ate his last meal prior to surgery

11:45 am Hunter drank his last cup of apple juice

2:45 pm We checked into our exam room at Children's Hospital

6:45 pm We (finally) spoke with the surgeon regarding both procedures

7:45 pm Hunter was put under anesthesia

9:00 pm We spoke with the surgeon while Hunter was in the recovery room

9:50 pm The recovery nurse carried a crying Hunter to us
She said, "He woke up, took one look at me and burst into tears."

10:05 pm Hunter downed a cup of apple juice and two popsicles

10:35 pm We were discharged from Children's Hospital

10:45 pm We arrived at our apartment at the Ronald McDonald House

11:00 pm Hunter ate wheat thins and strawberries and drank a cup of milk

11:15 pm Hunter went to sleep

Thursday, September 10, 2009

Infused ...

Hunter did extremely well at his infusion today. His number of platelets jumped from 11,000 to 270,000, which makes for a much better situation heading into tomorrow's (Friday's) surgery. An impressive feat was Hunter going from 6:00 am to 7:15 pm without a nap. Admittedly, there were some tears and a temper tantrum or two, but overall he kept it together.

Hunter must stop eating by 8:00 am tomorrow. He is allowed only clear liquids until noon. His check in time at Children's Hospital is set for 2:45. We are not sure what to expect other than another long day and a very tired boy.

Wednesday, September 9, 2009

Forward movement ...

Our phone finally rang at 5:15 pm today. One of our favorite nurses informed us that Hunter passed his viral screening! The pace is about to pick up. Actually it already has. Hunter had another blood draw at 7:00 tonight. He will receive a platelet transfusion tomorrow (Thursday) afternoon. The doctors will place a central line and perform a bone marrow aspiration on Friday. Hunter will be admitted to Children's Hospital on Sunday to begin pre-chemotherapy drugs. His chemotherapy starts Monday, September 14th, and his bone marrow transplant is scheduled for Wednesday, September 23rd.

Tuesday, September 8, 2009

The Bottom Line ...

Hunter's test results tomorrow must be negative for parainfluenza and adenovirus, along with any other virus, or his transplant will be delayed for a third time. We should have the results of today’s nasal wash and throat culture tomorrow or Thursday. If Hunter actually tests negative, the process will speed ahead toward platelet transfusion, line placement, bone marrow aspiration and pre-chemotherapy drugs. If he tests positive for any of the twelve viruses they search for, the process will be delayed, once again relying on the donor’s kindness and flexibility to reschedule.

All of your prayers, positive vibes and/or well wishes are appreciated. Thank you.

Friday, September 4, 2009

Thursday, September 3, 2009

Two isn't always better than one ...

The test results we received today indicated Hunter not only tested positive for parainfluenza, but also tested positive for adenovirus. Adenovirus can potentially develop into viral pneumonia or cause liver problems during transplant. The doctor said going to transplant with adenovirus is "as dangerous if not more dangerous" than going to transplant with parainfluenza.

Hunter is scheduled for an IVIG infusion tomorrow. They will draw blood prior to this to further confirm the adenovirus test result. They will also test a stool sample.

Hunter will have another nasal wash and throat culture on Tuesday. Positive results of any kind will most likely result in another delay.

The doctor also mentioned nasal washes are performed on every pre-transplant patient, and Hunter is the only patient who has tested positive for two viruses in the past month.

We wait and we wait some more ...

Wednesday, September 2, 2009

This is where we're at ...

We received the news we wanted from the donor yesterday afternoon. She is still available to donate, even with the delay. Our new transplant date, which is tentative due to Hunter's influenza, is Wednesday, September 23rd.

Hunter had another nasal wash and throat culture today. It's unfortunate as he now anticipates the procedures. He sheds lots of tears right before and during, but bounces back as soon as it's over. Today, bouncing back included cleaning the nurse's stethoscope with an alcohol pad, as well as saying, "Thank you for my nasal wash!"

We should have the results tomorrow afternoon. I guess we'll hold our breath until then ...

PS. The three of us had lunch with a very close friend from college today, good times.